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News in Brief - August 2022
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Week beginning 1st August 2022
News, articles, advocacy
World ME Alliance We "do not endorse the Lightning Process" say World ME Alliance members
An official statement about World ME Alliance's position on the commercial training programme Lightning Process. "World ME Alliance members have decided to make this extraordinary statement in response to growing concerns that continued promotion of the Lightning Process is likely to cause more harm to people with ME".
Article and full position paper here Thread here
USA - Bateman Horne Center (BHC) and Open Medicine Foundation (OMF) have partnered to launch the "Medical Education Resource Center (MERC) for multisystem chronic complex diseases." Lucinda Bateman and Linda Tannenbaum share more details in blog posts on the BHC website.
Blog posts here and here Thread here
USA "Biden–Harris Administration Releases Two New Reports on Long COVID to Support Patients and Further Research"
The National Research Action Plan on Long COVID report details advances in current research and charts a course for future study into Long COVID. The Services and Supports for Longer-Term Impacts of COVID-19 report highlights resources for health care workers and those effected by broader effects of COVID-19.
Announcement here Thread here
Acta Physiologica
“Chronic fatigue syndrome: an old public health issue highlighted by the COVID-19 pandemic” by Bonk & Keddar
This editorial provides a brief overview of ME/CFS and mentions that “the new guideline published by NICE in October 2021 has parted ways with the earlier, potentially harmful treatment recommendations.”
Article here Thread here
Australia - The Conversation Long COVID should make us rethink disability - and the way we offer support to those with 'invisible conditions'
Marie-Claire Seeley says Australian policymakers must step up their game to improve support for Long Covid patients. She mentions the story of the dismissal of the Royal Free Hospital patients in the 1950's as an origin of today's stigma of post viral disease. "The burden of these systematic failings now weighs heavy on a society faced with a worldwide tsunami of post-COVID conditions".
Article here Thread here
UK - The Guardian Editorial The Guardian view on long Covid: an unknown enemy
Calls for support and treatment for the 2 million people in UK with Long Covid. "In many regards, long Covid has echoes of existing autoimmune diseases and (usually post-viral) conditions such as ME/CFS, which are complex, poorly understood, hard to diagnose and tough to treat."
Article here Thread here
USA - The Pennsylvania Society for post-acute and long-term care medicine Long Covid
A short overview on Long Covid by Dr. Dilip Elangbam and Gita Elangbam. Mentions similarities to ME/CFS and how it has been neglected. "Should long COVID follow the same clinical pathway, we ought to understand the limitations of our knowledge, and make innovations for equal access, diversity and inequality".
Article here Thread here
USA - MEAction has a new podcast, Chronically Complex, hosted by Steven Molony and Jaime Seltzer.
Details here Thread here
......................
Research news and commentary
Medscape
Reporter Miriam Tucker has covered the recent annual meeting of the IACFS/ME in two articles:
"Treatments Explored to Ease Post-viral Symptoms of ME/CFS and Long Covid"
On the five treatment approaches Pyridostigmine, Oxaloacetate, Inspiritol, Stellate Ganglion Block and Transcutaneous Auricular Vagus Nerve Stimulation.
Article here Thread here
"Increasing Data Link ME/CFS, Long COVID, and Dysautonomia"
Summaries of presentations from Dr. Klimas, Dr. Bateman, Prof. Iwasaki, Dr. Nacul, Dr. Selin and Dr. Systrom.
Article here Thread here
UK DecodeME From an email sent to participants: 'It's nearly time to take part in DecodeME. We’ve improved our questionnaire, tested our systems and DecodeME is ready to launch in September. .. To take part in DecodeME you will need to be over 16, live in the UK and have had an ME/CFS diagnosis by a health professional.' Those who have not registered already can still do so.
Register here Thread here
The Patient-Led Research Fund, a $5 million fund for research grants, has announced a Request for Proposals. Grants will fund "biomedical research studies into Long COVID and associated conditions" including ME/CFS, POTS, and more. The application deadline is September 23, 2022.
Announcement here Thread here
Trial by Error by David Tuller Is POTS a "Functional Psychogenic Disorder"? Yes, According to NYU Research Team
A critical view on a recent paper titled "Fear conditioning as a pathogenic mechanism in the postural tachycardia syndrome". Tuller quotes David Putrino who says "At best, this research contributes almost nothing to our existing knowledge of POTS. At worst, it will contribute to gaslighting and psychologising of patients with a known neurological condition".
Article here Thread here
Kings College London
“A systematic literature review of randomized controlled trials evaluating prognosis following treatment for adults with chronic fatigue syndrome” Ingman et al.
The research team of Trudie Chalder has written another review paper claiming that graded exercise therapy (GET) and cognitive behavior therapy (CBT) are effective treatments for ME/CFS.
Article here Thread here
.....................
Research
Cells
"Serum of Post-COVID-19 Syndrome Patients with or without ME/CFS Differentially Affects Endothelial Cell Function In Vitro" by Flaskamp et al
'...investigated the effects of patients’ sera on endothelia cells (ECs) in vitro. PCS (n = 17), PCS/CFS (n = 13), and healthy controls (HC, n = 14)'. Differences were found between all 3 groups.
Paper here Thread here
Neuroscience Insights
"At the Root of 3 “Long” Diseases: Persistent Antigens Inflicting Chronic Damage on the Brain and Other Organs in Gulf War Illness, Long-COVID-19, and Chronic Fatigue Syndrome" by Georgopoulos et al.
In this hypothesis article the authors describe symptoms and some research on the 3 illnesses. 'We then discuss our Persistent Antigen (PA) hypothesis and highlight associations between antigen persistence due to HLA-antigen incongruence and chronic health conditions in general and the 3 “long” diseases above in particular'.
Paper here Thread here
.....................
Coming events
Severe ME Understanding & Remembrance Day 8th August, 2022
The 25% ME group for those with severe and very severe ME have created some poster images that can be shared on social media.
Thread with links here
UK Genetics Symposium
M.E. Genetics Research Symposium for Researchers, Carers and People with ME.
14th September 10 am to 4pm, at the University of Edinburgh and online. Free and open to all. The program is now available and registration open.
Talks in the morning and workshops and plenary in the afternoon.
Details and registration here Thread here
WHO Webinar Series "Post COVID-19 Condition: Children and Young Persons"
This is a three part webinar series focused on the three “Rs” - recognition, research, and rehabilitation. The first part is scheduled for 17 August 2022 from 13:30 – 15:30 CEST (Central European Summer Time). Advance registration required.
Announcement here Thread here
.....................
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
World ME Alliance We "do not endorse the Lightning Process" say World ME Alliance members
An official statement about World ME Alliance's position on the commercial training programme Lightning Process. "World ME Alliance members have decided to make this extraordinary statement in response to growing concerns that continued promotion of the Lightning Process is likely to cause more harm to people with ME".
Article and full position paper here Thread here
USA - Bateman Horne Center (BHC) and Open Medicine Foundation (OMF) have partnered to launch the "Medical Education Resource Center (MERC) for multisystem chronic complex diseases." Lucinda Bateman and Linda Tannenbaum share more details in blog posts on the BHC website.
Blog posts here and here Thread here
USA "Biden–Harris Administration Releases Two New Reports on Long COVID to Support Patients and Further Research"
The National Research Action Plan on Long COVID report details advances in current research and charts a course for future study into Long COVID. The Services and Supports for Longer-Term Impacts of COVID-19 report highlights resources for health care workers and those effected by broader effects of COVID-19.
Announcement here Thread here
Acta Physiologica
“Chronic fatigue syndrome: an old public health issue highlighted by the COVID-19 pandemic” by Bonk & Keddar
This editorial provides a brief overview of ME/CFS and mentions that “the new guideline published by NICE in October 2021 has parted ways with the earlier, potentially harmful treatment recommendations.”
Article here Thread here
Australia - The Conversation Long COVID should make us rethink disability - and the way we offer support to those with 'invisible conditions'
Marie-Claire Seeley says Australian policymakers must step up their game to improve support for Long Covid patients. She mentions the story of the dismissal of the Royal Free Hospital patients in the 1950's as an origin of today's stigma of post viral disease. "The burden of these systematic failings now weighs heavy on a society faced with a worldwide tsunami of post-COVID conditions".
Article here Thread here
UK - The Guardian Editorial The Guardian view on long Covid: an unknown enemy
Calls for support and treatment for the 2 million people in UK with Long Covid. "In many regards, long Covid has echoes of existing autoimmune diseases and (usually post-viral) conditions such as ME/CFS, which are complex, poorly understood, hard to diagnose and tough to treat."
Article here Thread here
USA - The Pennsylvania Society for post-acute and long-term care medicine Long Covid
A short overview on Long Covid by Dr. Dilip Elangbam and Gita Elangbam. Mentions similarities to ME/CFS and how it has been neglected. "Should long COVID follow the same clinical pathway, we ought to understand the limitations of our knowledge, and make innovations for equal access, diversity and inequality".
Article here Thread here
USA - MEAction has a new podcast, Chronically Complex, hosted by Steven Molony and Jaime Seltzer.
Details here Thread here
......................
Research news and commentary
Medscape
Reporter Miriam Tucker has covered the recent annual meeting of the IACFS/ME in two articles:
"Treatments Explored to Ease Post-viral Symptoms of ME/CFS and Long Covid"
On the five treatment approaches Pyridostigmine, Oxaloacetate, Inspiritol, Stellate Ganglion Block and Transcutaneous Auricular Vagus Nerve Stimulation.
Article here Thread here
"Increasing Data Link ME/CFS, Long COVID, and Dysautonomia"
Summaries of presentations from Dr. Klimas, Dr. Bateman, Prof. Iwasaki, Dr. Nacul, Dr. Selin and Dr. Systrom.
Article here Thread here
UK DecodeME From an email sent to participants: 'It's nearly time to take part in DecodeME. We’ve improved our questionnaire, tested our systems and DecodeME is ready to launch in September. .. To take part in DecodeME you will need to be over 16, live in the UK and have had an ME/CFS diagnosis by a health professional.' Those who have not registered already can still do so.
Register here Thread here
The Patient-Led Research Fund, a $5 million fund for research grants, has announced a Request for Proposals. Grants will fund "biomedical research studies into Long COVID and associated conditions" including ME/CFS, POTS, and more. The application deadline is September 23, 2022.
Announcement here Thread here
Trial by Error by David Tuller Is POTS a "Functional Psychogenic Disorder"? Yes, According to NYU Research Team
A critical view on a recent paper titled "Fear conditioning as a pathogenic mechanism in the postural tachycardia syndrome". Tuller quotes David Putrino who says "At best, this research contributes almost nothing to our existing knowledge of POTS. At worst, it will contribute to gaslighting and psychologising of patients with a known neurological condition".
Article here Thread here
Kings College London
“A systematic literature review of randomized controlled trials evaluating prognosis following treatment for adults with chronic fatigue syndrome” Ingman et al.
The research team of Trudie Chalder has written another review paper claiming that graded exercise therapy (GET) and cognitive behavior therapy (CBT) are effective treatments for ME/CFS.
Article here Thread here
.....................
Research
Cells
"Serum of Post-COVID-19 Syndrome Patients with or without ME/CFS Differentially Affects Endothelial Cell Function In Vitro" by Flaskamp et al
'...investigated the effects of patients’ sera on endothelia cells (ECs) in vitro. PCS (n = 17), PCS/CFS (n = 13), and healthy controls (HC, n = 14)'. Differences were found between all 3 groups.
Paper here Thread here
Neuroscience Insights
"At the Root of 3 “Long” Diseases: Persistent Antigens Inflicting Chronic Damage on the Brain and Other Organs in Gulf War Illness, Long-COVID-19, and Chronic Fatigue Syndrome" by Georgopoulos et al.
In this hypothesis article the authors describe symptoms and some research on the 3 illnesses. 'We then discuss our Persistent Antigen (PA) hypothesis and highlight associations between antigen persistence due to HLA-antigen incongruence and chronic health conditions in general and the 3 “long” diseases above in particular'.
Paper here Thread here
.....................
Coming events
Severe ME Understanding & Remembrance Day 8th August, 2022
The 25% ME group for those with severe and very severe ME have created some poster images that can be shared on social media.
Thread with links here
UK Genetics Symposium
M.E. Genetics Research Symposium for Researchers, Carers and People with ME.
14th September 10 am to 4pm, at the University of Edinburgh and online. Free and open to all. The program is now available and registration open.
Talks in the morning and workshops and plenary in the afternoon.
Details and registration here Thread here
WHO Webinar Series "Post COVID-19 Condition: Children and Young Persons"
This is a three part webinar series focused on the three “Rs” - recognition, research, and rehabilitation. The first part is scheduled for 17 August 2022 from 13:30 – 15:30 CEST (Central European Summer Time). Advance registration required.
Announcement here Thread here
.....................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 8th August 2022
News, articles, advocacy
ME Association Severe ME Week: Howes Goudsmit Prize Awarded to Producers of ‘Dialogues of a Neglected Illness’!
'Normally awarded to researchers who investigate severe ME, on this occasion the panel wanted to recognise the tremendous contribution from Natalie Boulton and Josh Biggs and the successful, ‘Dialogues of a Neglected Illness’ which has raised much-needed awareness about what it means to be the most neglected members of the ME patient community.'
Article here Thread here
Medscape Clinicians Can Help People With Severe ME/CFS, Even Unseen
3rd article by Miriam Tucker covering the recent IACFS/ME virtual meeting. Patient advocate Helen Baxter from the UK charity 25% ME Group gave a talk about malnourishment in bed bound ME/CFS patients. She also said severe ME/CFS patients have largely been excluded from research which Dr. Bateman confirms. Also mentions two articles by ME experts aimed to counter skepticism in the medical community about ME/CFS.
Article here Thread here
Trial by Error by David Tuller King's College London Still Promoting Discredited CBT/GET/Deconditioning Paradigm
Repost of a letter from the ME Association's medical advisor, Dr. Charles Shepherd, to King's College London which still hasn't updated its site in line with the new NICE guidelines.
Article here Thread here
Solve M.E. announced the launch of a Long Covid PSA campaign. The announcement includes this note: "It is important for those in the ME/CFS and post-infection disease communities to know that while these first ads focus on Long Covid, the 'How Long?' campaign will evolve to become an umbrella effort that includes these related diseases."
Announcement here Thread here
Australia - ABC radio Podcast 'Doctors and Dualism' In an interview between two philosophers, Diane O'Leary shares her perspective on why medically unexplained symptoms, including ME/CFS and Long Covid, have been wrongly classified by some clinicians as psychosomatic.
Podcast here Thread here
Knowable Magazine How long will it take to understand long Covid?
Includes a video with Prof. Akiko Iwasaki who says "It's a wakeup call for the society to start looking into other post acute infection syndromes, because we are going to be dealing with this going forward. Some of these Long Covid patients might develop into ME/CFS if they cannot recover from the Long Covid stage of the disease".
Article and video here Thread here
wbur To solve the mystery of long COVID, researchers look to an older disease
Dr. and ME sufferer Liisa Selin says long COVID and ME/CFS are the same disease, or very similar. Dr. Systrom says research into ME/CFS is gaining new respect as people realise its similarity to long COVID and that both patient groups are responding the same way to exercise.
Article here Thread here
Science Line Physical therapists have a lot to learn about post-viral fatigue in the wake of a "tsunami" of long COVID patients
On how health care personnel are incorporating knowledge from the ME field on PEM and pacing in their care for long Covid patients. Article describes PEM and includes an interview with Todd Davenport who is developing a new quality of life questionnaire for patients with PEM.
Article here Thread here
JAMA The US Now Has a Research Plan for Long COVID - Is It Enough?
On the "National Research Action Plan on Long COVID" which was released by the US government earlier this month. President of the COVID-19 support group Body Politic, Angela Meriguez Vázquez, says the report is mostly a summary of existing efforts and that investments as the RECOVER initiative "aren't driving new research on ME/CFS, or POTS, or MCAS, which is really where I think the patient community wants the research to go in a much bigger way".
Article here Thread here
USA From the Federal Reserve Board, Long COVID, Cognitive Impairment, and the Stalled Decline in Disability Rates.
Quote: "Non-participation attributed to disability was declining steadily in the years leading up to the pandemic, but that downward trend has stalled. Long COVID is likely one reason why."
Article here Thread here
...........
Petition
New Zealand
"Petition of Associated ME Society Incorporated : Reclassification of ME/CFS to disability". Addressed to the New Zealand Parliament. 'Petition request - That the House of Representatives urge the Government to reclassify ME/CFS from chronic illness to disability.' Anyone can sign.
Petition here Thread here
................
Coming events
The next IACFS/ME Virtual Journal Club will be held August 17 at 4:00 PM Eastern Time. The topic is Evaluating case diagnostic criteria for ME/CFS: toward an empirical case definition by Jason et al.
Register here Thread here
ME Action UK reports that Professor Douglas Kell, Research Chair in Systems Biology at Liverpool University, will be joining them to speak about his new paper on micro-clots in ME/CFS at the Millions Missing event in Parliament Square, London, 13th September 1-3pm.
Article here Thread here
...........
Research news and commentary
UK - Oxford ME/CFS Conference Report by Leah Davis for the ME Association
Topics included the blood brain barrier, microclots, diagnostic tests, cellular energetics, metabolomics, the microbiome, brain and muscle imaging, and the perils of challenging establishment backed treatments. Speakers included Resia Pretorius, Carl Morten and Caroline Struthers. "All the speakers have put together Podcasts about their work to support our IBRO project which we will put on line shortly”
Article here Thread here
Journal submissions
International Journal of Molecular Sciences: Special Issue "Advances of ME/CFS" Deadline for manuscript submissions: 30 January 2023.
The guest editor, Dr. Vincent Lombardi from the University of Nevada, aims to 'focus on the involvement of the immune system in ME/CFS. Reports that leverage commonalities between ME/CFS and long COVID-19 to identify the mechanisms behind immune abnormalities are highly encouraged.'
Details here Thread here
USA The Neuroinflammation, Pain, and Fatigue Lab at the University of Alabama is recruiting "women ages 18-55 who have symptoms of Chronic Fatigue Syndrome, ME/CFS" for 1.5 hour brain imaging study.
Details here Thread here
USA The Neuroinflammation, Pain, and Fatigue Lab at the University of Alabama is recruiting "men between the ages of 39-65 with Fibromyalgia and/or Chronic Fatigue Syndrome" for a research to learn more about chronic pain and fatigue. Participation includes a screening visit and twice-weekly blood draw visits over a 12-13 week period.
Details here Thread here
NATURE News Article: "Long-COVID treatments: why the world is still waiting" by Heidi Ledford.
Describes the lack of clarity over the cause of Long Covid, and the types of treatments being tested in clinical trials, including antiinflammatory, antithrombotic, steroids and diets. Many of the trials are pilots and some proposed treatments are not being tested. Treatment is patchy, but the article makes it clear graded exercise should not be offered.
Article here Thread here
Australia ABC news "Queensland researchers find overlap in pathology of long COVID and chronic fatigue syndrome"
Professor Sonya Marshall-Gradisnik at Griffith University reports finding the same calcium ion channel problem in Long Covid as they have previously reported in ME/CFS.
Article here Thread here
New Zealand Geographic "Warren Tate investigates unexplained illnesses"
Describes Tate's previous work on Alzheimer's disease, and his move to researching ME/CFS after his daughter became sick, and now his move into Long Covid research, aged 76. 'In ME patients, less energy was being made, and, as if to compensate, the mitochondria were overproducing other proteins instead. The factory, instead of generating its product, was busy making more machinery.'
Article here Thread here
UK BBC Inside Science Radio 4, 11th August. Section from 15 to 21 minutes. About the work of Dr Resia Pretorius and Prof Doug Kell on microclots in Long Covid and ME/CFS. They are found in other diseases too where there is inflammation. They don't cause the disease but may cause symptoms by limiting oxygen in some tissues. Pretorius also spoke about the mistreatment of people with ME/CFS because of misinterpretation as psychosomatic.
BBC here Thread here
...........
Research
PLOS One
"Phenotypic characteristics of peripheral immune cells of ME/CFS via transmission electron microscopy: A pilot study" by Jahanbani et al
Two matched pairs of male patient and control. Differences found include higher rate of apoptosis, necrosis and swollen mitochondria in patients' stimulated T cells, and abnormal lipid storage and platelet aggregation. The abstract concludes: 'These results indicate extensive morphological alterations in the cellular and mitochondrial phenotypes of ME/CFS patients’ immune cells and suggest new insights into ME/CFS biology.'
Paper here Thread here
BMC Public Health
"Prevalence of ME/CFS in Australian primary care patients: only part of the story?" by Orji et
'De-identified primary care data from the national MedicineInsight program were analyzed. The cohort were regularly attending patients, i.e. 3 visits in the preceding 2 years.' This yielded a prevalence of ME/CFS of approximately 0.1%, significantly higher in females than males. The authors discuss reasons this is likely to be an underestimate.
Paper here Thread here
Frontiers in Neurology
“Predictors of Chronic Fatigue Syndrome and Mood Disturbance After Acute Infection” by Sandler et al.
The authors analysed data from The Dubbo Infection Outcomes Study (DIOS). Persons with a more severe acute infection were more likely to develop a post-infectious fatigue syndrome.
Article here Thread here
Long Covid research
Papers published this week include:
"Distinguishing features of Long COVID identified through immune profiling", preprint by Iwasaki et al
Preprint here Thread here
Bloomberg article on this study: "Striking Drop in Stress Hormone Predicts Long Covid in Study" Article here
"Persistent capillary rarefication in long COVID syndrome" by Rovas et al
Using sublingual videomicroscopy, the authors found that '... the number of capillaries perfused in long COVID patients was comparable to that of critically ill COVID-19 patients and did not respond adequately to local variations of tissue metabolic demand.' The microvascular health score 'was markedly reduced in the long COVID cohort' compared to healthy controls.
Paper here Thread here
"Persistent Presence of Spike protein and Viral RNA in the Circulation of Individuals with Post-Acute Sequelae of COVID-19", preprint by Craddock et al.
Preprint here Thread here
"Exercise Intolerance in Post-Acute Sequelae of COVID-19 and the Value of Cardiopulmonary Exercise Testing- a Mini-Review" by Aparisi et al
Review here Thread here
“Predictors of “brain fog” 1 year after COVID-19 disease” by Cristillo et al.
This study reports that depression was the strongest predictor of brain fog in patients with Long Covid. Forum members have criticized the questionnaire used, the Zung self-rating depression scale, and its ability to differentiate depression from other symptoms.
Article here Thread here
...........
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
ME Association Severe ME Week: Howes Goudsmit Prize Awarded to Producers of ‘Dialogues of a Neglected Illness’!
'Normally awarded to researchers who investigate severe ME, on this occasion the panel wanted to recognise the tremendous contribution from Natalie Boulton and Josh Biggs and the successful, ‘Dialogues of a Neglected Illness’ which has raised much-needed awareness about what it means to be the most neglected members of the ME patient community.'
Article here Thread here
Medscape Clinicians Can Help People With Severe ME/CFS, Even Unseen
3rd article by Miriam Tucker covering the recent IACFS/ME virtual meeting. Patient advocate Helen Baxter from the UK charity 25% ME Group gave a talk about malnourishment in bed bound ME/CFS patients. She also said severe ME/CFS patients have largely been excluded from research which Dr. Bateman confirms. Also mentions two articles by ME experts aimed to counter skepticism in the medical community about ME/CFS.
Article here Thread here
Trial by Error by David Tuller King's College London Still Promoting Discredited CBT/GET/Deconditioning Paradigm
Repost of a letter from the ME Association's medical advisor, Dr. Charles Shepherd, to King's College London which still hasn't updated its site in line with the new NICE guidelines.
Article here Thread here
Solve M.E. announced the launch of a Long Covid PSA campaign. The announcement includes this note: "It is important for those in the ME/CFS and post-infection disease communities to know that while these first ads focus on Long Covid, the 'How Long?' campaign will evolve to become an umbrella effort that includes these related diseases."
Announcement here Thread here
Australia - ABC radio Podcast 'Doctors and Dualism' In an interview between two philosophers, Diane O'Leary shares her perspective on why medically unexplained symptoms, including ME/CFS and Long Covid, have been wrongly classified by some clinicians as psychosomatic.
Podcast here Thread here
Knowable Magazine How long will it take to understand long Covid?
Includes a video with Prof. Akiko Iwasaki who says "It's a wakeup call for the society to start looking into other post acute infection syndromes, because we are going to be dealing with this going forward. Some of these Long Covid patients might develop into ME/CFS if they cannot recover from the Long Covid stage of the disease".
Article and video here Thread here
wbur To solve the mystery of long COVID, researchers look to an older disease
Dr. and ME sufferer Liisa Selin says long COVID and ME/CFS are the same disease, or very similar. Dr. Systrom says research into ME/CFS is gaining new respect as people realise its similarity to long COVID and that both patient groups are responding the same way to exercise.
Article here Thread here
Science Line Physical therapists have a lot to learn about post-viral fatigue in the wake of a "tsunami" of long COVID patients
On how health care personnel are incorporating knowledge from the ME field on PEM and pacing in their care for long Covid patients. Article describes PEM and includes an interview with Todd Davenport who is developing a new quality of life questionnaire for patients with PEM.
Article here Thread here
JAMA The US Now Has a Research Plan for Long COVID - Is It Enough?
On the "National Research Action Plan on Long COVID" which was released by the US government earlier this month. President of the COVID-19 support group Body Politic, Angela Meriguez Vázquez, says the report is mostly a summary of existing efforts and that investments as the RECOVER initiative "aren't driving new research on ME/CFS, or POTS, or MCAS, which is really where I think the patient community wants the research to go in a much bigger way".
Article here Thread here
USA From the Federal Reserve Board, Long COVID, Cognitive Impairment, and the Stalled Decline in Disability Rates.
Quote: "Non-participation attributed to disability was declining steadily in the years leading up to the pandemic, but that downward trend has stalled. Long COVID is likely one reason why."
Article here Thread here
...........
Petition
New Zealand
"Petition of Associated ME Society Incorporated : Reclassification of ME/CFS to disability". Addressed to the New Zealand Parliament. 'Petition request - That the House of Representatives urge the Government to reclassify ME/CFS from chronic illness to disability.' Anyone can sign.
Petition here Thread here
................
Coming events
The next IACFS/ME Virtual Journal Club will be held August 17 at 4:00 PM Eastern Time. The topic is Evaluating case diagnostic criteria for ME/CFS: toward an empirical case definition by Jason et al.
Register here Thread here
ME Action UK reports that Professor Douglas Kell, Research Chair in Systems Biology at Liverpool University, will be joining them to speak about his new paper on micro-clots in ME/CFS at the Millions Missing event in Parliament Square, London, 13th September 1-3pm.
Article here Thread here
...........
Research news and commentary
UK - Oxford ME/CFS Conference Report by Leah Davis for the ME Association
Topics included the blood brain barrier, microclots, diagnostic tests, cellular energetics, metabolomics, the microbiome, brain and muscle imaging, and the perils of challenging establishment backed treatments. Speakers included Resia Pretorius, Carl Morten and Caroline Struthers. "All the speakers have put together Podcasts about their work to support our IBRO project which we will put on line shortly”
Article here Thread here
Journal submissions
International Journal of Molecular Sciences: Special Issue "Advances of ME/CFS" Deadline for manuscript submissions: 30 January 2023.
The guest editor, Dr. Vincent Lombardi from the University of Nevada, aims to 'focus on the involvement of the immune system in ME/CFS. Reports that leverage commonalities between ME/CFS and long COVID-19 to identify the mechanisms behind immune abnormalities are highly encouraged.'
Details here Thread here
USA The Neuroinflammation, Pain, and Fatigue Lab at the University of Alabama is recruiting "women ages 18-55 who have symptoms of Chronic Fatigue Syndrome, ME/CFS" for 1.5 hour brain imaging study.
Details here Thread here
USA The Neuroinflammation, Pain, and Fatigue Lab at the University of Alabama is recruiting "men between the ages of 39-65 with Fibromyalgia and/or Chronic Fatigue Syndrome" for a research to learn more about chronic pain and fatigue. Participation includes a screening visit and twice-weekly blood draw visits over a 12-13 week period.
Details here Thread here
NATURE News Article: "Long-COVID treatments: why the world is still waiting" by Heidi Ledford.
Describes the lack of clarity over the cause of Long Covid, and the types of treatments being tested in clinical trials, including antiinflammatory, antithrombotic, steroids and diets. Many of the trials are pilots and some proposed treatments are not being tested. Treatment is patchy, but the article makes it clear graded exercise should not be offered.
Article here Thread here
Australia ABC news "Queensland researchers find overlap in pathology of long COVID and chronic fatigue syndrome"
Professor Sonya Marshall-Gradisnik at Griffith University reports finding the same calcium ion channel problem in Long Covid as they have previously reported in ME/CFS.
Article here Thread here
New Zealand Geographic "Warren Tate investigates unexplained illnesses"
Describes Tate's previous work on Alzheimer's disease, and his move to researching ME/CFS after his daughter became sick, and now his move into Long Covid research, aged 76. 'In ME patients, less energy was being made, and, as if to compensate, the mitochondria were overproducing other proteins instead. The factory, instead of generating its product, was busy making more machinery.'
Article here Thread here
UK BBC Inside Science Radio 4, 11th August. Section from 15 to 21 minutes. About the work of Dr Resia Pretorius and Prof Doug Kell on microclots in Long Covid and ME/CFS. They are found in other diseases too where there is inflammation. They don't cause the disease but may cause symptoms by limiting oxygen in some tissues. Pretorius also spoke about the mistreatment of people with ME/CFS because of misinterpretation as psychosomatic.
BBC here Thread here
...........
Research
PLOS One
"Phenotypic characteristics of peripheral immune cells of ME/CFS via transmission electron microscopy: A pilot study" by Jahanbani et al
Two matched pairs of male patient and control. Differences found include higher rate of apoptosis, necrosis and swollen mitochondria in patients' stimulated T cells, and abnormal lipid storage and platelet aggregation. The abstract concludes: 'These results indicate extensive morphological alterations in the cellular and mitochondrial phenotypes of ME/CFS patients’ immune cells and suggest new insights into ME/CFS biology.'
Paper here Thread here
BMC Public Health
"Prevalence of ME/CFS in Australian primary care patients: only part of the story?" by Orji et
'De-identified primary care data from the national MedicineInsight program were analyzed. The cohort were regularly attending patients, i.e. 3 visits in the preceding 2 years.' This yielded a prevalence of ME/CFS of approximately 0.1%, significantly higher in females than males. The authors discuss reasons this is likely to be an underestimate.
Paper here Thread here
Frontiers in Neurology
“Predictors of Chronic Fatigue Syndrome and Mood Disturbance After Acute Infection” by Sandler et al.
The authors analysed data from The Dubbo Infection Outcomes Study (DIOS). Persons with a more severe acute infection were more likely to develop a post-infectious fatigue syndrome.
Article here Thread here
Long Covid research
Papers published this week include:
"Distinguishing features of Long COVID identified through immune profiling", preprint by Iwasaki et al
Preprint here Thread here
Bloomberg article on this study: "Striking Drop in Stress Hormone Predicts Long Covid in Study" Article here
"Persistent capillary rarefication in long COVID syndrome" by Rovas et al
Using sublingual videomicroscopy, the authors found that '... the number of capillaries perfused in long COVID patients was comparable to that of critically ill COVID-19 patients and did not respond adequately to local variations of tissue metabolic demand.' The microvascular health score 'was markedly reduced in the long COVID cohort' compared to healthy controls.
Paper here Thread here
"Persistent Presence of Spike protein and Viral RNA in the Circulation of Individuals with Post-Acute Sequelae of COVID-19", preprint by Craddock et al.
Preprint here Thread here
"Exercise Intolerance in Post-Acute Sequelae of COVID-19 and the Value of Cardiopulmonary Exercise Testing- a Mini-Review" by Aparisi et al
Review here Thread here
“Predictors of “brain fog” 1 year after COVID-19 disease” by Cristillo et al.
This study reports that depression was the strongest predictor of brain fog in patients with Long Covid. Forum members have criticized the questionnaire used, the Zung self-rating depression scale, and its ability to differentiate depression from other symptoms.
Article here Thread here
...........
S4ME social media: Facebook, Twitter and YouTube
Week beginning 15th August 2022
News, articles, advocacy
UK Government Department of Health and Social Care "INFORMATION FOR STAKEHOLDERS - Development of a Delivery Plan on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)".
This document outlines the structure that has been set up of working groups and the purpose of each group. The 3 groups, overseen by The Delivery Plan Task & Finish Group, are The Research Working Group, The Attitudes and Education Working Group and The Living with ME/CFS Working Group. They plan to publish a draft delivery plan later this year and a final plan next year.
Thread with copy of the document here.
UK Action for ME Consultation Media guidelines for ME.
'This consultation seeks feedback on suggested media advice for journalists reporting on M.E. and developing a helpful handbook of best practices for distribution to media outlets.' Closing date for submissions 12th September.
Details here Thread here
Denmark Report based on interviews with 19 severe ME patients and their carers
The report is written by professor and psychologist Peter la Cour and MD Susanne la Cour who also performed the home visits to the patients and their carers. The main conclusions are that Denmark lacks knowledge and health care services for these patients.
Report here (in Danish) Thread with summary here
Canada - Le Nouvelliste Article in a Canadian newspaper on Long Covid, which also mentions ME, pacing, current research and that we are thirty years behind in research on disability following infections.
Article here (in French) Thread with translated quotes here
New Zealand - The Spinoff People with long Covid get strength from growing Facebook group
Long Covid sufferer Rachel Judkins on the importance of online communities with people in similar situations. "It feels a bit like crowdfunding but with tools for relieving symptoms".
Article here Thread here
Podcast Pediatrics on Call Pediatrics Research Roundup, Diagnosing and Treating Long-COVID - Ep. 64
Podcast from 2021 with interview with Dr. Peter Rowe where he talks about Long Covid, ME, PEM, orthostatic intolerance and more. Dr. Rowe says it's atrocious how ME patients have been neglected and that they need to be included in the effort to treat Long Covid. The section starts after 12 minutes.
Podcast here Thread here
USA The Bateman Horne Center has posted a new video about Post Exertional Malaise (40 minutes) on YouTube.
Video here Thread here
Ireland - Galway Advertiser Thousands of Galway adults with Long Covid struggling to access services
The article raises alarm about the high numbers of Long Covid in Ireland and the risk of this overwhelming the health service. Dr. John Cullinan says there is concern of an increase of ME/CFS as a result of the pandemic and that deficiency in funding and services for ME/CFS patients should "be addressed as a priority because, sadly, our record in this area to date in Ireland has been shameful".
Article here Thread here
STAT Biden's long Covid plan is a good start. But it needs to go further
Ryan Prior and Kimberley Knackstedt write that long Covid must be viewed as a disability, that we must look to similar post-infectious diseases and to collaborate with the patient group. "A muscular program tackling long Covid would yield a big return on its investment and a model for patient-centred research across all complex, chronic illness."
Article here Thread here
#MEAction has scheduled a Virtual Town Hall for Saturday, August 27, from 12:00 – 1:00 pm PDT (3:00 - 4:00 pm EDT). The purpose is to discuss plans for the September 2022 #MillionsMissing Protest in Washington, DC.
Announcement here Thread here
............
Research news and commentary
Science Blood abnormalities found in people with Long Covid
On a recent preprint from Iwasaki et al titled "Distinguishing features of Long COVID identified through immune profiling"(see last week's news brief). Science writes: They also suggest that, as many scientists and patients have suspected, Long Covid shares certain features with ME/CFS, another condition thought to follow an infection".
Article here Thread here
WebMD Other Viruses Offer Hints Toward the Mystery of Long COVID
On various current hypotheses behind Long Covid including the work of the PolyBio Research Foundation and of Prof. Akiko Iwasaki. Mady Hornig says the pandemic is a turning point when it comes to the understanding of post-acute infection syndromes.
Article here Thread here
WHO
On Wednesday 17 August, The World Health Organization’s clinical management and maternal child adolescent teams hosted a webinar on Post COVID-19 Condition in Children and Young People. Forum members have made a brief summary of the talks.
Thread here
Virology Blog
“Trial By Error: A Letter to Journal Brain About Paper Claiming POTS Is a “Functional Psychogenic Disorder””
David Tuller and colleagues (including Jonathan Edwards, David Putrino, Mady Hornig, and Brian Hughes) have written a letter to ‘Brain’, criticising a study the journal had published that described postural orthostatic tachycardia syndrome ( POTS) as a functional psychogenic disorder.
Article here Thread here
............
Research
Molecular Medicine
"Transient receptor potential melastatin 3 dysfunction in post COVID-19 condition and ME/CFS patients" by Sasso, Marshall-Gradisnik et al
Measured TRPM3 ion channel activity in isolated NK cells from 5 people each with ME/CFS, Long Covid and healthy controls. The two disease groups had closely matched results which differed significantly from controls.
Paper here Thread here
Fatigue: Biomedicine, Health & Behavior
"Repeated maximal exercise tests of peak oxygen consumption in people with ME/CFS: a systematic review and meta-analysis" by Franklin & Graham
This meta-analysis of 2 day C-PET studies concludes: 'Synthesised data indicate that people with ME/CFS demonstrate a clinically significant test–retest reduction in work rate at the anaerobic threshold when compared to apparently healthy controls.'
Paper here Thread here
USA - California Blood samples are needed from ME/CFS patients and healthy controls for itaconate shunt research. Samples must be given in person, not shipped. Contact Anna at aokumu@stanford.edu for details.
Thread here
The Lancet
“Neurological and psychiatric risk trajectories after SARS-CoV-2 infection: an analysis of 2-year retrospective cohort studies including 1 284 437 patients” by Taquet et al.
The authors used electronic health records to compare the trajectory of patients with COVID-19 to patients with other respiratory infections. While the risk of cognitive deficit, dementia, psychotic disorder, and epilepsy remained increased 2 years after a COVID-19 diagnosis, the risks of mood and anxiety disorders subsided early and showed no overall excess over the 2-year follow-up.
Article here Thread here
PLOS Neglected Tropical Diseases
“Chronic sequelae complicate convalescence from both dengue and acute viral respiratory illness” by Kalimuddin et al.
This study from Singapore followed 209 patients with acute dengue or another acute viral respiratory infections (ARI) for a period of up to one year. 18.0% in the dengue cohort and 14.6% in the ARI cohort experienced persistent symptoms.
Article here Thread here
Psychosomatic medicine
“Cognitive task performance and subjective cognitive symptoms in individuals with Chronic Fatigue Syndrome or Fibromyalgia: A cross-sectional analysis of the Lifelines cohort study” by Joustra et al.
This Dutch study used data on CFS and fibromyalgia patients detected in the Lifelines cohort. Cognitive task performance was poorer in CFS patients vs. controls without disease and controls with a medical disorder, although the severity of cognitive dysfunction was mild.
Article here Thread here
.............
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
UK Government Department of Health and Social Care "INFORMATION FOR STAKEHOLDERS - Development of a Delivery Plan on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)".
This document outlines the structure that has been set up of working groups and the purpose of each group. The 3 groups, overseen by The Delivery Plan Task & Finish Group, are The Research Working Group, The Attitudes and Education Working Group and The Living with ME/CFS Working Group. They plan to publish a draft delivery plan later this year and a final plan next year.
Thread with copy of the document here.
UK Action for ME Consultation Media guidelines for ME.
'This consultation seeks feedback on suggested media advice for journalists reporting on M.E. and developing a helpful handbook of best practices for distribution to media outlets.' Closing date for submissions 12th September.
Details here Thread here
Denmark Report based on interviews with 19 severe ME patients and their carers
The report is written by professor and psychologist Peter la Cour and MD Susanne la Cour who also performed the home visits to the patients and their carers. The main conclusions are that Denmark lacks knowledge and health care services for these patients.
Report here (in Danish) Thread with summary here
Canada - Le Nouvelliste Article in a Canadian newspaper on Long Covid, which also mentions ME, pacing, current research and that we are thirty years behind in research on disability following infections.
Article here (in French) Thread with translated quotes here
New Zealand - The Spinoff People with long Covid get strength from growing Facebook group
Long Covid sufferer Rachel Judkins on the importance of online communities with people in similar situations. "It feels a bit like crowdfunding but with tools for relieving symptoms".
Article here Thread here
Podcast Pediatrics on Call Pediatrics Research Roundup, Diagnosing and Treating Long-COVID - Ep. 64
Podcast from 2021 with interview with Dr. Peter Rowe where he talks about Long Covid, ME, PEM, orthostatic intolerance and more. Dr. Rowe says it's atrocious how ME patients have been neglected and that they need to be included in the effort to treat Long Covid. The section starts after 12 minutes.
Podcast here Thread here
USA The Bateman Horne Center has posted a new video about Post Exertional Malaise (40 minutes) on YouTube.
Video here Thread here
Ireland - Galway Advertiser Thousands of Galway adults with Long Covid struggling to access services
The article raises alarm about the high numbers of Long Covid in Ireland and the risk of this overwhelming the health service. Dr. John Cullinan says there is concern of an increase of ME/CFS as a result of the pandemic and that deficiency in funding and services for ME/CFS patients should "be addressed as a priority because, sadly, our record in this area to date in Ireland has been shameful".
Article here Thread here
STAT Biden's long Covid plan is a good start. But it needs to go further
Ryan Prior and Kimberley Knackstedt write that long Covid must be viewed as a disability, that we must look to similar post-infectious diseases and to collaborate with the patient group. "A muscular program tackling long Covid would yield a big return on its investment and a model for patient-centred research across all complex, chronic illness."
Article here Thread here
#MEAction has scheduled a Virtual Town Hall for Saturday, August 27, from 12:00 – 1:00 pm PDT (3:00 - 4:00 pm EDT). The purpose is to discuss plans for the September 2022 #MillionsMissing Protest in Washington, DC.
Announcement here Thread here
............
Research news and commentary
Science Blood abnormalities found in people with Long Covid
On a recent preprint from Iwasaki et al titled "Distinguishing features of Long COVID identified through immune profiling"(see last week's news brief). Science writes: They also suggest that, as many scientists and patients have suspected, Long Covid shares certain features with ME/CFS, another condition thought to follow an infection".
Article here Thread here
WebMD Other Viruses Offer Hints Toward the Mystery of Long COVID
On various current hypotheses behind Long Covid including the work of the PolyBio Research Foundation and of Prof. Akiko Iwasaki. Mady Hornig says the pandemic is a turning point when it comes to the understanding of post-acute infection syndromes.
Article here Thread here
WHO
On Wednesday 17 August, The World Health Organization’s clinical management and maternal child adolescent teams hosted a webinar on Post COVID-19 Condition in Children and Young People. Forum members have made a brief summary of the talks.
Thread here
Virology Blog
“Trial By Error: A Letter to Journal Brain About Paper Claiming POTS Is a “Functional Psychogenic Disorder””
David Tuller and colleagues (including Jonathan Edwards, David Putrino, Mady Hornig, and Brian Hughes) have written a letter to ‘Brain’, criticising a study the journal had published that described postural orthostatic tachycardia syndrome ( POTS) as a functional psychogenic disorder.
Article here Thread here
............
Research
Molecular Medicine
"Transient receptor potential melastatin 3 dysfunction in post COVID-19 condition and ME/CFS patients" by Sasso, Marshall-Gradisnik et al
Measured TRPM3 ion channel activity in isolated NK cells from 5 people each with ME/CFS, Long Covid and healthy controls. The two disease groups had closely matched results which differed significantly from controls.
Paper here Thread here
Fatigue: Biomedicine, Health & Behavior
"Repeated maximal exercise tests of peak oxygen consumption in people with ME/CFS: a systematic review and meta-analysis" by Franklin & Graham
This meta-analysis of 2 day C-PET studies concludes: 'Synthesised data indicate that people with ME/CFS demonstrate a clinically significant test–retest reduction in work rate at the anaerobic threshold when compared to apparently healthy controls.'
Paper here Thread here
USA - California Blood samples are needed from ME/CFS patients and healthy controls for itaconate shunt research. Samples must be given in person, not shipped. Contact Anna at aokumu@stanford.edu for details.
Thread here
The Lancet
“Neurological and psychiatric risk trajectories after SARS-CoV-2 infection: an analysis of 2-year retrospective cohort studies including 1 284 437 patients” by Taquet et al.
The authors used electronic health records to compare the trajectory of patients with COVID-19 to patients with other respiratory infections. While the risk of cognitive deficit, dementia, psychotic disorder, and epilepsy remained increased 2 years after a COVID-19 diagnosis, the risks of mood and anxiety disorders subsided early and showed no overall excess over the 2-year follow-up.
Article here Thread here
PLOS Neglected Tropical Diseases
“Chronic sequelae complicate convalescence from both dengue and acute viral respiratory illness” by Kalimuddin et al.
This study from Singapore followed 209 patients with acute dengue or another acute viral respiratory infections (ARI) for a period of up to one year. 18.0% in the dengue cohort and 14.6% in the ARI cohort experienced persistent symptoms.
Article here Thread here
Psychosomatic medicine
“Cognitive task performance and subjective cognitive symptoms in individuals with Chronic Fatigue Syndrome or Fibromyalgia: A cross-sectional analysis of the Lifelines cohort study” by Joustra et al.
This Dutch study used data on CFS and fibromyalgia patients detected in the Lifelines cohort. Cognitive task performance was poorer in CFS patients vs. controls without disease and controls with a medical disorder, although the severity of cognitive dysfunction was mild.
Article here Thread here
.............
S4ME social media: Facebook, Twitter and YouTube
Week beginning 22nd August 2022
News, articles, advocacy
UK FII survey Cerebra and the University of Leeds FII (Fabricated or Induced Illness) Survey, closes 31st August 2022
'Cerebra has become increasingly concerned over recent years with an apparent rise in reports from families with disabled children which suggest that a significant number have been accused of creating or exaggerating their child’s difficulties...So, we are carrying out a survey to gather more information about the extent of accusations of FII and PP and would like as many families with disabled children as possible to take part in it.'
Survey here Thread here
#MEAction and Long Covid Families have developed a new resource for patients, "Pacing and Management Guide for Pediatric ME/CFS and Long Covid." This document explains PEM and warns against GET.
Announcement here PDF here Thread here
Solve M.E. has published the summer 2022 edition of the The Solve M.E. Chronicle. Topics include the Long Haul Voices video series, Ramsay research grants, and advocacy month.
PDF here Thread here
Law and Health blog: "Limitation of Consent to Treatment: template form + Guidance Notes (with downloads)" Valerie Eliot Smith has prepared a form with guidance notes to help patients prepare for medical appointments related to ME/CFS if they are concerned about inappropriate treatment. The blog explains the purpose and limitations of these useful documents.
Blog here Thread here
Trial by Error by David Tuller Todd Davenport on Post-Exertional Symptom Exacerbation and ME/CFS
Interview from April with professor of physical therapy Todd Davenport on key points of his and his colleagues's four-part series in the Journal of Orthopaedic & Sports Physical Therapy titled "Lessons from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for Long COVID".
Interview here Thread here
Nature Could tiny blood clots cause long COVID's puzzling symptoms?
News article about the micro-clot hypothesis and treatment with blood filtering in long COVID. Includes a short reference to ME/CFS as a similar disease. Researchers have found amyloid clots in ME/CFS patients, but much lower amounts compared with long COVID patients. Maureen Hanson comments that this brings a renewed interest in a hypothesis from the 1980's concerning abnormal clots contributing to symptoms.
Article here Thread here
BBC Long Covid: Mum puts hopes in experimental treatment
About Long Covid sufferer Kate who is travelling to Germany for experimental micro clot treatment. Dr. David Strain says blocked capillaries could account for fluctuations in symptoms. Dr. Amy Small says "not all treatments out there will be right for everyone so it's important to seek advice".
Article here Thread here
WebMD Long COVID Mimics Other Post-Viral Conditions
Article by Miriam E. Tucker on how Long Covid was predicted by ME advocates such as Jaime Seltzer from MEAction. David M. Systrom, MD, says ME/CFS and Long Covid are "frighteningly similar, if not identical" and that he sees a change in doctor's attitude towards ME/CFS. Nancy G. Klimas, MD, says doctors were previously taught that antigens had to be present to drive the immune system to create sickness and that only recently the idea of a immune system overreacting long term is getting more accepted. Avindra Nath, MD, says Long Covid provides an opportunity to research post viral disease in a well-defined population. Emily Taylor from Solve M.E. says they've capitalised on the political front now when there's a spotlight.
Article here Thread here
The Atlantic Willed Helplessness Is the American Condition
Article is from the beginning of August and written by Meghan O'Rourke. "The NIH needs to lead with more urgency than it has to date, listening to the expertise of researchers in infection-associated illness in fields such as myalgic encephalomyelitis/chronic fatigue syndrome".
Article here Thread here
NYT If You're Suffering After Being Sick With Covid, It's Not Just in Your Head
Opinion pice by Zeynep Tufekci on how Long Covid sufferers are dismissed despite centuries of evidence that viral infections can lead to disease. She calls for a National Institute for Postviral Conditions.
Article here Thread here
WebMD Why Exercise Doesn’t Help People With Long COVID
Lists several issues with exercise saying that "multiple studies have found deconditioning is not entirely – or even mostly – to blame." Mentions PEM (links to the CDC's ME/CFS website) and autonomic dysfunction. But near the end of the article one doctor says "gradually increasing your exercise is still good advice for the vast majority of people" and "with slow and steady progress, a lot of people can get profoundly better."
Article here Thread here
............
Research news and commentary
UK research funding UK government funding bodies NIHR and MRC 'Efficacy and Mechanism Evaluation Programme' invites applications 'to meet recommendations in research identified in NICE guidance that has been published or updated since 2015'. Closes 6th Dec 2022.
Details here Thread here
............
Research
Journal of Pain Research
"The Significance of Pain Drawing as a Screening Tool for Cervicogenic Headache and Associated Symptoms in Chronic Fatigue" by Bernhoff et al.
'Pain drawings and clinical data from 275 patients investigated for ME/CFS were stratified into: 1) cervicogenic headache as determined by a C2 pain pattern, 2) headache with no C2 pain pattern, and 3) no headache.' 42% showed a C2 pain pattern and this was associated with dizziness and poorer quality of life.
Paper here Thread here
Research Square preprint (not yet peer reviewed)
"Autoimmune Gene Expression Profiling of Fingerstick Whole Blood in Chronic Fatigue Syndrome" by Wang et al
166 ME/CFS and 83 healthy controls recruited via social media collected blood and urine at home. This enabled a significant number of more severe house and bed bound patients to participate. The blood was analysed for RNA gene expression and DNA viral load. Some significant differences were found but it it unclear whether this is confounded by some of the more severe patients also having an autoimmune disease such as rheumatoid arthritis.
Paper here Thread here
Pathophysiology
"Autoimmune Autonomic Dysfunction Syndromes: Potential Involvement and Pathophysiology Related to Complex Regional Pain Syndrome, Fibromyalgia, Chronic Fatigue Syndrome, Silicone Breast Implant–Related Symptoms and Post-COVID Syndrome" by Mahroum et al
The authors suggest that, based on research findings for each of these syndromes, it may be useful to group them under the general heading of “autoimmune autonomic dysfunction syndromes”, and that this would facilitate better research.
Article here Thread here
Trials
“Identifying disrupted biological factors and patient-tailored interventions for chronic fatigue in adolescents and young adults with Q-Fever Fatigue Syndrome, Chronic Fatigue Syndrome and Juvenile Idiopathic Arthritis (QFS-study): study protocol for a randomized controlled trial with single-subject experimental case series design” by Vroegindeweije et al.
This is a protocol for a Dutch randomized trial that will evaluate the effectiveness of patient-tailored lifestyle advices in patients with ME/CFS, juvenile idiopathic arthritis or Q-fever fatigue syndrome.
Article here Thread here
Health and Social Care in the Community
“The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): issues identified by adolescents and their families” by Clery et al.
The authors conducted interviews with adolescent patients, their family members, and medical professionals on the role of school in managing ME/CFS.
Article here Thread here
International Journal of Environmental Research and Public Health
“Lowered Quality of Life in Long COVID Is Predicted by Affective Symptoms, Chronic Fatigue Syndrome, Inflammation and Neuroimmunotoxic Pathways” by Maes et al.
The authors studied the role of body temperature and oxygen saturation in Long Covid.
Article here Thread here
.............
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
UK FII survey Cerebra and the University of Leeds FII (Fabricated or Induced Illness) Survey, closes 31st August 2022
'Cerebra has become increasingly concerned over recent years with an apparent rise in reports from families with disabled children which suggest that a significant number have been accused of creating or exaggerating their child’s difficulties...So, we are carrying out a survey to gather more information about the extent of accusations of FII and PP and would like as many families with disabled children as possible to take part in it.'
Survey here Thread here
#MEAction and Long Covid Families have developed a new resource for patients, "Pacing and Management Guide for Pediatric ME/CFS and Long Covid." This document explains PEM and warns against GET.
Announcement here PDF here Thread here
Solve M.E. has published the summer 2022 edition of the The Solve M.E. Chronicle. Topics include the Long Haul Voices video series, Ramsay research grants, and advocacy month.
PDF here Thread here
Law and Health blog: "Limitation of Consent to Treatment: template form + Guidance Notes (with downloads)" Valerie Eliot Smith has prepared a form with guidance notes to help patients prepare for medical appointments related to ME/CFS if they are concerned about inappropriate treatment. The blog explains the purpose and limitations of these useful documents.
Blog here Thread here
Trial by Error by David Tuller Todd Davenport on Post-Exertional Symptom Exacerbation and ME/CFS
Interview from April with professor of physical therapy Todd Davenport on key points of his and his colleagues's four-part series in the Journal of Orthopaedic & Sports Physical Therapy titled "Lessons from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for Long COVID".
Interview here Thread here
Nature Could tiny blood clots cause long COVID's puzzling symptoms?
News article about the micro-clot hypothesis and treatment with blood filtering in long COVID. Includes a short reference to ME/CFS as a similar disease. Researchers have found amyloid clots in ME/CFS patients, but much lower amounts compared with long COVID patients. Maureen Hanson comments that this brings a renewed interest in a hypothesis from the 1980's concerning abnormal clots contributing to symptoms.
Article here Thread here
BBC Long Covid: Mum puts hopes in experimental treatment
About Long Covid sufferer Kate who is travelling to Germany for experimental micro clot treatment. Dr. David Strain says blocked capillaries could account for fluctuations in symptoms. Dr. Amy Small says "not all treatments out there will be right for everyone so it's important to seek advice".
Article here Thread here
WebMD Long COVID Mimics Other Post-Viral Conditions
Article by Miriam E. Tucker on how Long Covid was predicted by ME advocates such as Jaime Seltzer from MEAction. David M. Systrom, MD, says ME/CFS and Long Covid are "frighteningly similar, if not identical" and that he sees a change in doctor's attitude towards ME/CFS. Nancy G. Klimas, MD, says doctors were previously taught that antigens had to be present to drive the immune system to create sickness and that only recently the idea of a immune system overreacting long term is getting more accepted. Avindra Nath, MD, says Long Covid provides an opportunity to research post viral disease in a well-defined population. Emily Taylor from Solve M.E. says they've capitalised on the political front now when there's a spotlight.
Article here Thread here
The Atlantic Willed Helplessness Is the American Condition
Article is from the beginning of August and written by Meghan O'Rourke. "The NIH needs to lead with more urgency than it has to date, listening to the expertise of researchers in infection-associated illness in fields such as myalgic encephalomyelitis/chronic fatigue syndrome".
Article here Thread here
NYT If You're Suffering After Being Sick With Covid, It's Not Just in Your Head
Opinion pice by Zeynep Tufekci on how Long Covid sufferers are dismissed despite centuries of evidence that viral infections can lead to disease. She calls for a National Institute for Postviral Conditions.
Article here Thread here
WebMD Why Exercise Doesn’t Help People With Long COVID
Lists several issues with exercise saying that "multiple studies have found deconditioning is not entirely – or even mostly – to blame." Mentions PEM (links to the CDC's ME/CFS website) and autonomic dysfunction. But near the end of the article one doctor says "gradually increasing your exercise is still good advice for the vast majority of people" and "with slow and steady progress, a lot of people can get profoundly better."
Article here Thread here
............
Research news and commentary
UK research funding UK government funding bodies NIHR and MRC 'Efficacy and Mechanism Evaluation Programme' invites applications 'to meet recommendations in research identified in NICE guidance that has been published or updated since 2015'. Closes 6th Dec 2022.
Details here Thread here
............
Research
Journal of Pain Research
"The Significance of Pain Drawing as a Screening Tool for Cervicogenic Headache and Associated Symptoms in Chronic Fatigue" by Bernhoff et al.
'Pain drawings and clinical data from 275 patients investigated for ME/CFS were stratified into: 1) cervicogenic headache as determined by a C2 pain pattern, 2) headache with no C2 pain pattern, and 3) no headache.' 42% showed a C2 pain pattern and this was associated with dizziness and poorer quality of life.
Paper here Thread here
Research Square preprint (not yet peer reviewed)
"Autoimmune Gene Expression Profiling of Fingerstick Whole Blood in Chronic Fatigue Syndrome" by Wang et al
166 ME/CFS and 83 healthy controls recruited via social media collected blood and urine at home. This enabled a significant number of more severe house and bed bound patients to participate. The blood was analysed for RNA gene expression and DNA viral load. Some significant differences were found but it it unclear whether this is confounded by some of the more severe patients also having an autoimmune disease such as rheumatoid arthritis.
Paper here Thread here
Pathophysiology
"Autoimmune Autonomic Dysfunction Syndromes: Potential Involvement and Pathophysiology Related to Complex Regional Pain Syndrome, Fibromyalgia, Chronic Fatigue Syndrome, Silicone Breast Implant–Related Symptoms and Post-COVID Syndrome" by Mahroum et al
The authors suggest that, based on research findings for each of these syndromes, it may be useful to group them under the general heading of “autoimmune autonomic dysfunction syndromes”, and that this would facilitate better research.
Article here Thread here
Trials
“Identifying disrupted biological factors and patient-tailored interventions for chronic fatigue in adolescents and young adults with Q-Fever Fatigue Syndrome, Chronic Fatigue Syndrome and Juvenile Idiopathic Arthritis (QFS-study): study protocol for a randomized controlled trial with single-subject experimental case series design” by Vroegindeweije et al.
This is a protocol for a Dutch randomized trial that will evaluate the effectiveness of patient-tailored lifestyle advices in patients with ME/CFS, juvenile idiopathic arthritis or Q-fever fatigue syndrome.
Article here Thread here
Health and Social Care in the Community
“The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): issues identified by adolescents and their families” by Clery et al.
The authors conducted interviews with adolescent patients, their family members, and medical professionals on the role of school in managing ME/CFS.
Article here Thread here
International Journal of Environmental Research and Public Health
“Lowered Quality of Life in Long COVID Is Predicted by Affective Symptoms, Chronic Fatigue Syndrome, Inflammation and Neuroimmunotoxic Pathways” by Maes et al.
The authors studied the role of body temperature and oxygen saturation in Long Covid.
Article here Thread here
.............
S4ME social media: Facebook, Twitter and YouTube
Last edited:
For next week's news go to this thread:
News in Brief - September 2022
News in Brief - September 2022